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Temporal Arteritis (GCA)

Posted , 6 users are following.

jaydee456
jaydee456

Hello.

My husband was diagnosed with probable giant cell arteritis in November He has had several spells of facial pain and ultra sensitive scalp (not even able to touch hair without pain). One time also severe pain in the ear as well. This was put down to ear infection ???. However when he had what we thought was a virus as he had high temperature shivers shakes but no other symptoms in November we finally had to go to doc as pain was so bad he did not shave or want to brush his hair. Saw a trainee GP thinking it was neuralgia but she was concerned and ordered a blood test.

Had next day call from her to come in urgent.

Bingo ESR 68 & CRP 139. contacted the rheumatology next day then called to say get to surgery for scrip for steroids (40mg to reduce every month) and apt with hospital on Friday. (Biopsy ordered but cancelled twice) but 2 wks later tests well down after 7 weeks tests back to normal levels. We are so grateful that she picked up on this as we are sure that was the cause of the severe ear pain last January. If this is correct he is soooo lucky his eyes were not affected.

Oh his weight is up 6kg since end of November. :cry:

Thanks for reading.

Have any of you had similar symptoms early on. When ear infection diagnosis was made they were stumped by the scalp thing. But specialist said it could well have been caused by GCA

1 like, 54 replies

54 Replies

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  • wendy5050
    wendy5050 jaydee456

    Posted

    Hi I managed to get to doc ( at hospital) and collapsed !! feeling so faint and dizzy. Well, had ECG which was ok. Had ESR done again. Complained of sore throat,temple and jaw pain.After getting script for more predisolone and amitriptyline my hubby took me home. They think I had a panic attack.Back in 2 weeks. 

    My doc cannot understand why steroids not helping yet.It's been 2 weeks since relapse. Any views ? Trying to stay positive playing scramble on kindle ! Take care x

     

    • janet262
      janet262 wendy5050

      Posted

      WENDY, HAVE ALSO DONE THE HOSPITAL BIT A COUPLE OF TIMES.  YES IT IS FRIGHTENING BUT AT LEAST YOU KNOW THAT IT WAS PROBABLY A PANIC ATTACK WHICH I THINK IS ABSOLUTELY UNDERSTANDABLE.  CAN THEY PUT YOU ON ANYTHING ELSE AS WELL AS STEROIDS? ARE YOU UNDER A SPECIALIST AS WELL AS THE DOC.?  WHAT IS YOUR STEROID DOES?  HOW HIGH IS YOUR ESR?.  ARE YOU WINNING ON SCRAMBLE?
    • wendy5050
      wendy5050 janet262

      Posted

      Hi have not had ESR results from yesterday. Feeling spaced out today and very flat. Took 10mg amitriptyline last night which I've not had before. I have a consultant at eye clinic but have not seen him again yet.steroid dose is 60mg. Yes scrabble is a great distraction !!!  Wendy x

       

    • jaydee456
      jaydee456 wendy5050

      Posted

      I play sudoku on my phone. Got solitaire too but it is so small you can hardly see the numbersbiggrin
    • wendy5050
      wendy5050 jaydee456

      Posted

      I play a lot on my kindle. Can recommend majong,scramble,jigsaw,solitaire all free apps. Go wild x
    • janet262
      janet262 wendy5050

      Posted

      Haven't got a kindle but play Scrabble online.  Join me

       

  • janet262
    janet262 jaydee456

    Posted

    Hi Jaydee and Mary. Not heard from you for ages. Hope things are going well and improving. I am still fat. On 10mg. pred. and been injecting myself with Methatrexate which I am giving a break to for a couple of weeks (advised) as getting rubbish side effects butttttt on the other side esr. down to 11. How are you and husband??? Keep in touch. Had my moan. By the way, either of you live in the North West??
  • wendy5050
    wendy5050 jaydee456

    Posted

    Hi good to catch up. Like you just the usual. Am on 13mg, reducing by 1mg weekly till I get to 10 and the ???? Flying to see family in Aus for a month soon and hoping all will be ok. Take care of yourself.Hope you manage to loose weight now your down to 10 x
    • jaydee456
      jaydee456 wendy5050

      Posted

      Hi hubby ok, he is on the last countdown from 10 - 0 by 1mg a month.  On 7 now then 6  next week. Then blood test to see how it's going. Have a good trip. We are off to Jersey next week.. We lve in Hampshire.

      Take care.

      Jay

    • wendy5050
      wendy5050 jaydee456

      Posted

      Hi again. Glad thinks are on track for your hubby. It is a worrying time reducing pred.  Have a great holiday. I intend to have a good holiday. It will probably be our last long haul holiday with mine and James disabilities so we need to make the most of it.Have had problems with head pains while travelling on coaches with vibrations so hope flying will be ok. We live in Aberdeen. Take care

      Wendy

    • Mary_J
      Mary_J wendy5050

      Posted

      Hiya all. Haven't posted anything for a while but I'm still reducing. Down to 7mg now hopefully 6mg in Sept. Have been pretty good but seem to wake up most mornings with a headache. Frontal and top of my head. It eases after a while and some say you can get steroid headaches?? Seeing my Rheumy next week and dont know if  I should mention it. Wendy, do you mind me asking about your travel insurance and if you had to pay extra  because of the Temporal Arteritis. I am longing to go away but fear the insurance will be too much. Thank you all for listening.  Take care all. X
    • jaydee456
      jaydee456 Mary_J

      Posted

      hi Mary

      you must always declarell pre-existing health conditions when taking out travel insurance. If you claim, even for something else they can refuse the claim saying policy is invalid. yes they do charge extra but best to be covered.

      Jay

    • Mary_J
      Mary_J jaydee456

      Posted

      Thank you Jaydee456.  I wouldn't go without declaring it that would be silly wouldn't it. I meant should I tell my Rheumy about the headaches. I suppose I should really. Oh! I'm still fat too lol, but at least we kept our sight didn't we, so it's a small price to pay. Take care and keep well. Xx
    • wendy5050
      wendy5050 Mary_J

      Posted

      Hi Mary J

      I have not been referred to Rheumy , only eye clinic , but you should mention all your aches and pains so they get the complete list of symptoms. 

      I did have to pay a little extra £45 for my travel insurance which I thought was great. It was through my bank. So hope you are ok with yours.

      Look after yourself

      Wendy☺

    • Mary_J
      Mary_J wendy5050

      Posted

      Thank you Wendy. That sounds great. I'll look into it. Yes I will tell my Rheumy.  As you said, they have to have a full picture.  I just hope I won't have to up my steroids. We'll see. I think I was referred because I was admitted to hospital when I was diagnosed, but if you are getting on fine with the eye specialist that's good, but you can ask to be referred if you want to. Thanks again for your reply. Take care.  Xx
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